Louisiana joins in passing the Down Syndrome Information Act

Seal_of_Louisiana_2010Sort of. But a key addition to Louisiana’s law may result in expectant mothers actually NOT receiving information about Down syndrome.

As covered in these posts, so far Massachusetts (2012), Kentucky (2013), Delaware, Maryland, and now Louisiana (2014) have passed versions of the Down Syndrome Information Act (“DSIA”). Here’s the challenge trying to be addressed by the Down Syndrome Information Act:

In 2007, professional guidelines changed so that every woman is now offered prenatal testing for Down syndrome. Those same guidelines also recognized that women should receive the “natural history” about Down syndrome and that referral to genetic counselors, social workers, and national and local parent support organizations can be “very helpful.”

In 2009, a survey of 500 ACOG fellows determined whether obstetricians were complying with the new guidelines. What the survey concluded was that there was now a “new paradigm” in administering prenatal testing for Down syndrome. Indeed, almost all OBs answered they had changed their clinical practice and were offering prenatal testing for Down syndrome to every one of their patients.

But here’s the problem.

In the same survey, only 29% said they provided “educational materials” to their patients.

So, the “new paradigm” is that patients are being offered prenatal testing, but they are NOT receiving the rest of the information also recommended to accompany prenatal testing–namely accurate information about Down syndrome and referral to support resources, like local Down syndrome support organizations.

Massachusetts decided to do what the professional guidelines called for and, in 2012, Massachusetts became the first state to pass the Down Syndrome Information Act. The act requires that every health care professional who delivers a prenatal or postnatal test result for Down syndrome, also delivers written information and referral to local support organizations. As listed above, since then Kentucky, Delaware, Maryland, and, now Louisiana have passed versions of this law (Kentucky & Delaware are essentially identical to Massachusetts; Maryland and Louisiana made key changes).

In 2013, Massachusetts then became the first (and so far only) state to fund the implementation of the law by appropriating $100,000 to purchase and distribute the only materials that meet the law’s requirements for being accurate, medically reviewed, reviewed by Down syndrome organizations, and being socially and culturally appropriate: the Lettercase book “Understanding a Down Syndrome Diagnosis.”

The challenge being met by the Down Syndrome Information Act is summed up in its title: it is requiring that parents receive information about Down syndrome. It does so, because as the survey of ACOG fellows (and findings since) show is that women are not receiving the information they’re supposed to be provided following a prenatal test result.

Well, except for one thing.

One thing they are most assuredly being told.

You see, under those same ACOG guidelines which created the “new paradigm,” one thing was made clear in the guidelines:

The option of pregnancy termination also should be discussed.

And it most definitely is. Women share how they are told the diagnosis and then that their OB has scheduled their termination for later that week, or even that same day!

The Down Syndrome Information Act is not about abortion–that is something expectant mothers have to be counseled about according to professional guidelines. But the Act is trying to ensure that whatever decision a mother makes it will be after she has an accurate depiction of what a life with Down syndrome can be like, what supports are available for her, and, that she will be aware of the other option covered in the materials to be provided under the act, adoption (something else that is supposed to be covered by the guidelines, but is never done).

I’ll let Nancy McCrea Innone pick up from this point with her recent column addressing where the Louisiana law went awry in meeting the mission of the Down Syndrome Information Act. Indeed, she makes the very key point that an addition to the law prohibiting the state from recognizing materials that include termination as an equal option following a prenatal diagnosis will very likely only result in patients being told more emphatically about termination as an option.

Hat tip to David Perry for publishing Nancy’s column at his blog and to Amy Julia Becker for her service as editor of the piece.

UPDATE: David Perry has posted a follow up commentary of his own on his concerns about the change Louisiana made to the Down Syndrome Information Act.

UPDATE: Mike Sullivan calls my attention in the comments below to this post published by the Bioethics Defense Fund, the organization behind the amendment to the Louisiana act. The BDF explains the amendment by saying there is a distinction between a physician counseling a patient about termination (as they’re required to do by professional guidelines) versus materials provided by the state recognizing termination as an equal option. In the latter scenario, the BDF’s stated concern is that then it becomes state-sponsored discrimination against those with Down syndrome because the state provides information recognizing termination as an equal option. What do you think? Is that the issue the Down Syndrome Information Act is designed to address? Is it state-sponsored discrimination against those with Down syndrome if a law requires written resources recognized by professional medical organizations as appropriate for expectant parents be provided to them with a prenatal test result if those materials mention termination as an option?

UPDATE (06/23/16): The Louisiana Department of Public Health has established a webpage to implement its version of the DSIA. From the website:

The National Down syndrome Congress provides the brochure located at the link below which entails the public information required pursuant to the ACT:

http://ndsccenter.org/worpsite/wp-content/uploads/2012/09/DS-Brochure-ENG-5-2.pdf

Here’s “the public information required pursuant to the ACT” that the link takes you to:

NDSC LA DSIA

As the introductory paragraph predicted, the Louisiana version of the DSIA is resulting “in expectant mothers actually NOT receiving information about Down syndrome.”

Comments

  1. The new Louisiana law on pre-natal testing t inserts a correct disability rights perspective into the area of prenatal discrimination and is to be welcomed with open arms.

    I have popped over to Nancy’s blog to address her concerns.

    • Mike–here’s the problem: it won’t be welcomed with open arms. It can’t be according to current medical guidelines. Just because the state can’t recognize materials presenting termination as an equal option, that does absolutely nothing to change the standard of care that requires physicians present termination as an equal option. As I’ve written at this post and this one, there is a vehicle for making the case that termination should not be permitted in the case of Down syndrome. But that vehicle is not the Down Syndrome Information Act. The two goals should be pursued through the appropriate means: to ensure women get information prior to making a decision, pass the Down Syndrome Information Act; to have a public policy expression that termination should not be an option in the case of Down syndrome, pass the version of the North Dakota law.

      • I understand that argument, but this is a social justice issue. It is the medical guidelines that offend, but Nancy and co. defend those, rather than address the root problem. No one said advancing social justice would be welcome. I accept that it won’t be for those that don’t want change, but for those that do, this should be welcome news.

        If people are concerned about the resources they promote being excluded, they can always produce a new version that excludes the termination option which offends disability rights.

        At the end of the day, if there is to be progress, people need to move past defending positions that reinforce discrimination.

        Is the Down syndrome community the only one where advocates defend discrimination against their own people?

        Anyway, in the interests of peace, I have addresses the main shortcoming with her article on her blog, rather than here.

  2. If abortion is legal, then why should parents of a expectant DS Child “have to” be driven in the abortion choice? Why not promote adoption then? It’s sad , I heard, that almost 90% of DS babies are aborted.

    • It’s not that parents “have to” be driven in the abortion choice, but rather, physicians, to comply with the standard of care, have to discuss termination with the parents following a prenatal diagnosis. They are also supposed to discuss adoption, but as the link to the study in the post reports, adoption is almost never discussed. The 90% figure no longer applies in the United States, but it remains that high in other countries, particularly those with public healthcare systems that pay for prenatal testing.

      • Is the “standard of care” a law? I don’t follow why physicians “have” to discuss termination. Is it not a case of them saying that they think they should and have therefore tried to mandated it and the DS community accepted? What law says they have too?

        Nancy raised the question of “wrongful births”. Clearly that is not a justification for opposing the La. law, because that can be covered outside the provision of the prenatal resources law. Off course wrongful birth suites should be illegal.

        • Mike–I will reply more substantively to your other e-mails, but on this question of standard of care, the professional guidelines state that OBs should discuss termination following a prenatal diagnosis. This is how they are trained. In those states which recognize wrongful birth (26 jurisdictions, i.e. more than half), if the OB fails to counsel their patient about termination, then their patient could sue them saying they were never counseled and had they been, they would have terminated. Because professional guidelines state that they should have been counseled, that’s the standard of care, and failing to do so is grounds for a medical malpractice claim. Even in states where wrongful birth claims are not allowed, such as my own, I’ve had doctors say they offer prenatal testing because they don’t want to be sued for a wrongful birth claim. So, passing a law that says the state can’t provide materials that recognize termination as an equal option does nothing to actually change clinical practice–even the language of the law doesn’t say patients shouldn’t be counseled that termination is an equal option, just that the materials the state provides can’t recognize it as an equal option. The law does nothing to stop a woman from being counseled about termination and that is the one they she most assuredly will be counseled about because it has been the standard of care for years and how medical professionals are trained.

          • Isn’t the US a democracy, where democratic process decides what is lawful, not unelected medical professionals? I find this a bizarre situation.

            The success of the law is in ensuring that La. is not participating in State sponsored prenatal discrimination, and that La. is prepared to take that stand.

            If other measures are needed to tighten it up, then let’s promote those. But let’s stop criticising people who are prepared to make a stand for those with Down syndrome rather than parental choice.

          • Mike–while I’m not entirely familiar with the Kiwi government, being a former member of the British Empire would make me believe that like here, you have a system of laws, but you also have the common law developed through the courts. Medical malpractice is largely premised on common law, i.e. rulings of courts, not legislative acts. Hence how professional guidelines setting the standard of care are then cited by courts to determine whether a physician breached that standard of care; as I said, in most jurisdictions in the U.S., a court would rule that the physician had breached that standard if they did not advise their client about termination following a prenatal diagnosis, as the professional guidelines require. This is a situation of where I’m dealing with how the world is, not how it ought to be. However, the Louisiana law does nothing to change the status quo to the one you argue it ought to be, i.e. that termination for disability is discriminatory. There were no public statements, there has been no media coverage, and no public pronouncement from any Louisiana elected official saying it is wrong to terminate a pregnancy on the basis of a prenatal test for Down syndrome. So, no one has taken a stand through this legislation and as I’ve said in other replies, the law does nothing to stop women being advised of the option of termination, which they most assuredly will.

          • Our courts would interpret law and develop case law. All of which can be overturned by higher courts or by the State with new laws. There will be post coming about the law and legal reasonings, so I will send that to you as soon as I can.

  3. I wasn’t able to post on that blog, but this is what I wrote.

    The new Louisiana law on pre-natal testing does nothing of the sort. It inserts a correct disability rights perspective into the area of prenatal discrimination. You are attempting here to introduce abortion politics into the issue. It has nothing to do with that. I have already written about that, so here is the link http://www.savingdowns.com/louisiana-to-prohibit-termination-option-in-prenatal-resources/

    Your so-called pro-information cause already introduced abortion politics into prenatal resources by including the abortion option. A correct understanding of the pro-choice position is the pro-information position. That is why it is called informed choice.

    If you believe it is correct to include the termination option, then present an ethical case for that, which is solidly framed in terms of the rights of those with Down syndrome and broader disability rights. You could ask the self-advocates – “if a mum receives a pre-natal diagnosis that her child is going to be like you, should she be given resources presenting abortion as an option”. Really? Is this your position/ Do you advocate that on receiving a prenatal diagnose of sex, mum should be given a leaflet about being female/male and presented with an option for an abortion? Is this how you advocate for people with Down syndrome to be liberated and free from discrimination.

    The La. law is entirely correct in it’s understanding of disability rights, it has nothing to do with abortion politics. It may not suit your resources that offend disability rights, so be it. Liberation requires advocates to take effective measures to address prenatal discrimination and not hide behind excuses like, we must defend pre-natal discrimination because the medical community says that is what we must do. Effective advocacy is centred on the rights of those with Down syndrome, nothing else. The right to be free from prenatal discrimination, just like you and me

  4. Pro-information must never be framed in a soley pro-life context. Women will make the right choice for themselves and their families. Providing fair and balanced information about the richly rewarding lives possible for citizens with Down syndrome, instead of the oft heard “Down syndrome as a death sentence” speil, will put appropriate justice in the hands of two vulnerable groups of marginalized citizens.

  5. Mark Bradford says:

    This is a really difficult and charged question. We know that the majority chooses abortion following a positive prenatal diagnosis for Down syndrome. Is ignoring the topic of abortion in educational materials going to discourage that choice, when for many it is the first and most evident “option”? Perhaps the positive data that these materials provide will change some hearts and minds, but it seems that it is more than reasonable to present the medically validated liabilities of choosing abortion, along with the argument that electing to end the life of an otherwise wanted child will likely cause deep psychological harm to the parents. Probably telling parents who are trying to manage a prenatal diagnosis of Down syndrome that they will be guilty of discrimination if they choose to abort is not a good idea, but I isn’t presenting a “neutral” stance on abortion an injustice to women who will likely face incredible psychological trauma over the choice to abort an otherwise wanted child, and to their child who will not ever know the joy of its family’s love and support.

    • Thank you, Mark, for your thoughtful reply. While the professional medical organizations would not sign onto the Lettercase booklet unless it mentioned termination, the booklet does cover that some parents experience psychological distress following their decision to terminate. Matthew Hennessy addressed the inclusion of termination in the Lettercase book and concluded after reading that page in the book, “As a committed, on-the-record pro-lifer, I must confess: This passage is presented in just about the most neutral language imaginable.” As I said while the bill was being considered, putting the focus on one page in the book, the one that covers termination, which women will be counseled about regardless, ignores the 20-some-odd other pages of information about Down syndrome–social supports, inclusion, increased life expectancy–which will not be shared in the majority of cases. The Lettercase book provides the accurate information expectant mothers have said they want to receive, and does so recognizing the psychological impact of abortion, something that would not be mentioned by organizations supporting selective abortion.

    • Vanessa says:

      http://stillstandingmag.com/2014/06/face-heartbreaking-choice/

      Women often do not feel deep psychological harm from terminating a pregnancy due to medical reasons. There may be grief but not trauma.

      • Vanessa, to your point, hence why I consciously say “some parents” just as you recognize that “Women often do not feel …”. Reviewing the post you linked to, two things stood out to me: the statements making clear that those moms featured were not coerced and did not make their decision out of ignorance. Unfortunately, we know that not all moms who terminate following a prenatal test result for Down syndrome can say the same. Some are coerced and many are not provided accurate information. Which is what the Down Syndrome Information Act is meant to address: simply providing the information so that whatever the choice, it is one that is informed.

  6. Here is a great overview from the lawyers behind the La. amendment.

    “It is important that bills introduced in the United States aimed at providing parents with support information don’t fall into the trap of unintentionally engaging in state-sponsored discrimination by offering ‘pregnancy termination’ as an acceptable option.”

    They will more fully address the disability discrimination arguments in a full article that will be published on The Public Discourse.

    http://bdfund.org/wordpress/?p=1061

  7. In terms of your last question regarding discrimination (not in the sense of discernment): If the State fails to mandate providing written information that includes termination as an option when Down syndrome is not diagnosed, but mandates that written information that includes termination as an option when Down syndrome is diagnosed, then yes, I would argue that is a clear case of discrimination. Because a different level of treatment is being mandated based on a prohibited ground of discrimination.

  8. 1. The state has been mandated to offer information due to a ds diagnosis directly because the ds advocacy community has requested it.
    2. Since it is required then all legal options should be mentioned including termination.
    3. This law does not prohibit discussions of termination by medical professionals and does nothing.
    4. There is no discrimination because a fetus does not have personhood rights. The ADA is for the living only.
    5. The failure of the DS community to criticize this law shows how likely they are to be complicit in supporting a radical pro life agenda.
    6. That this law is in place while funding for those living with disabilities are cut shows again the ds community is interested in fetal rights with out concerns for the here and now.

    http://www.nola.com/politics/index.ssf/2013/07/now_waiver_disability_waiting.html

    7. The only goal of the non termination groups is to forcibly increase the numbers of children born with Ds through the removal of options that parents have.

    The pro information title is a joke.

    • Vanessa, a few clarifications: 1. The Louisiana law was not promoted or sponsored by the local DS advocacy groups in Louisiana. 5. There has been criticism from those in the DS community, see Nancy Iannone’s piece at David Perry’s site and his own post, both in the updates to this post. 6. Again, the DS community did not promote the passage of this version of the law so this criticism doesn’t apply–it sounds like the local groups haven’t spoken out on either of these public policy issues. 7. Your point #3 undermines your criticism here, since if the law does nothing (and it doesn’t in the way of prohibiting discussions about terminations) then this measure is not in furtherance of removing options. All this said, I invite you to ask for the national organizations to comment on the record if you are concerned about what they’re view is of the Louisiana law, specifically whether termination should be included in materials given to expectant parents by their medical provider and if not, why not, or if so, then why?

    • Vanessa, a few clarifications:

      1. It was a State initiative.
      2. No, that would apply if the State also mandated written resources including termination as an option when a diagnosis showed that Down syndrome wasn’t presented. There is no legal right to termination due to a diagnosis of Down syndrome in the US.
      3. The law indicates that the that the State will not participate in discrimination.
      4. See point 2. Discrimination occurs when any negative differential occurs because of disability. That can occur before birth, if the unborn child is treated with less protection than another due to disability.
      5. It’s a disability rights law.
      6. The DS community is generally interested in all issues of discrimination.
      7. No, the goal is to address discriminatory action by States, which they have done. Excellent.

      The title is what it is. I am sure you don’t have an objection to parents being provided accurate information when receiving a diagnosis.

Trackbacks

  1. […] passed the law. In 2013, Kentucky passed it. And, then, this year, Maryland, Delaware, Louisiana, and now Pennsylvania have passed their versions of the Down Syndrome Information […]

  2. […] joins Pennsylvania, Maryland, Delaware, Louisiana, Kentucky, and Massachusetts in passing a law requiring information to be provided with any test […]

  3. […] Texas, and Louisiana each prohibit the information recognized by the implementing state agency of the DSIA to reference […]

Leave a Reply

%d bloggers like this: